Quite something

Today the Australian Parliament passed a bill that turns on its head the way this country has treated people with a disability. The National Disability Insurance Scheme (NDIS) turns our current system on its head, from one of ‘please Sir, can I have some more’ welfare to one which recognises them for what they are, people. It makes a vital change in the whole mentality around disability services by turning it to one of support being an investment not charity.

It will be a medicare type scheme providing a secure and consistent pool of funds for services and support to people with a disability.

Many people think that already exists.

No, what exists is a yearly allocation of funds. Those funds run out half way through the year? No matter, go onto the waiting list. But oh, yes there’s quite a few before you so you might not be successful next year either. But maybe the year after that!

That scenario was told to me at an early information session on the NDIS by a mother trying to secure an automated bed for her profoundly disabled adult son. Those beds cost several thousands of dollars. When she queried what she was meant to do the service suggested she approach a charity or maybe hold a fund-raiser. For her son’s bed.

The NDIS has been a concept kicked around our hallowed halls for 40 years. Something people have given lip service to but not much more.

I do not care what your political leaning, I do.not.care. but this Government is the first to actually action it. The first to say this is important, to say to the four million or so Australians who have a disability that they matter.

To grasp the scale of that, those four million people equates roughly to the population of Melbourne. Then consider the 2.6 million Australians who care for family members with a disability. Now you’ve got the population of Victoria.

As soon as you hear someone start to say how great it is but gee, how we can fund this, how we can pay for it I want you to tell them you’re talking about the population of Victoria. You’re going to turn your back on an entire State?

I want you to tell them that ALMOST HALF of people living with a disability in Australia live in poverty or very close to it.

Tell them the median income of someone with a disability is HALF that of someone without a disability and that even though the number of people with a disability grows, participation in the workforce for the sector has remained unchanged since 2003.

I want you to tell them that they are witnessing something of magnitude, something other countries will look to, a true moment in time for our political and social history.

It is the sign of a civilised society.

If we need to make some hard calls to make it work then that is what will be done.

Not because it’s nice, not because it makes us feel good, but because this is about ensuring no one gets left behind. That no matter what dodgy chromosome you were born with, or whether you can hear, or see, or walk or talk, YOU MATTER.

Now the scheme won’t cover all of us. It is designed to support the most severely disabled among us. I actually wonder if Oscar will be eligible but that is of little concern because there are so so many who do.

At the end of last year I spoke at length with Senator Jan McLucas, Parliamentary Secretary to the Prime Minister and for Disability and Carers. She’s been working on disability matters since 2004 when a raft of recommendations were made after a Senate Enquiry into disability services but even then she said they knew they were “tinkering at the edges”.

The NDIS looks at the individual and their needs over a lifetime. It gives families one point of contact and while it doesn’t sound like much it means families only need to provide the history once. It’s about investing in the individual. “We want families to stay strong, stay together and be supported as they want to be supported,” she said.

Some states – WA and Tasmania – actually have a model along those lines. Jog it in WA and Tas!

For the rest of us it will take some time with pilot programs starting in five states to get it underway. One of the most exciting aspects Jan told me about the scheme is that the system will be one that looks at the individual’s needs at that point in time. At the moment you have to re-invent the wheel at every milestone.

“If you’re a 6 month old child with Downs Syndrome the support is essentially to the mum and dad. Totally different to a 16 year old with Downs and then extrapolate that to when they’re 26. The focus on the person will be much more acute but we’ll also be viewing the person in their environment,” she said.

so well written and so right, doesn’t matter what party you support but you’ve got to support this. I really hope it means big changes and some relief to the families who need it. Imagine being told to fundraise for a bed or approach a charity….for a bed! what does that do to your pride, that just about breaks my heart.

friends with babies and small children with special needs and blogs like yours open my eyes to life with a child with special needs and I think if anyone doesn’t agree with the scheme then they need to spend a day with a family.

Corrie:)

Really Worried

I agree, but there must be other social security payments we can reduce or abolish to fund this. Of Australia’s tax revenue of 170-180 bio, @35% is paid out in social security payments. For example, Abstudy…you have to be 1/8 Aboriginal to recive this…ridiculous. Look why Europe has soooo many problems….people want handouts, something for nothing. If you took out the top 1-2% of tax payers in Australia, paying 48% plus everything else (GST etc etc)m there would be nothing for those who need it. So lets stop and think before we allocate our funds.

Fiona

Hio Horray! Hip Horray! Hip Horray! No one gets left behind = JOY!

Megan

Thank you for explaining that so beautifully, the NDIS is an amazing achievement, hopefully now set in stone and unable to be dismantled by anyone in the future. Well done for being part of the consultative process that brought it into existence.

Thanks for posting this Kim – the pope stole all the media yesterday but Im thinking that even on a slow news day there wouldnt be much coverage? Taking the person and whats around them into account never seems to be the outcome for any of the marginalised groups in our community…I hope it makes long lasting, positive changes.

I worked for a long time as a social worker in the disability team for NSW Government working alongside families of adults with a disability – never felt so helpless in a job. There was so little for them..

Linda

A massive thank-you to Kim and all who have been advocating on behalf of each and every Australian.

My family is one of the lucky ones…..so far. We have no need to access a NDIS. But life is a lottery and who knows when it may be needed. You can’t predict lightning strikes and you can’t predict when disability will enter your life or the lives of family members.

The NDIS will remove one small layer of stress that individuals and families have to deal with and allow them to focus on achieving positive outcomes. They can fight the disability not the system.

No one gets left behind and no family gets lefts behind.

This issue is far above politics and funding. It is a hand-up not a hand-out.

Lesley

Wonderful, Kim. Thanks for explaining it so well.
It’s baffling that we’ve heard so little about this this week. Would have been a great counter to all the shit about Gillard and the meejya and 457 visas.
I agree wholeheartedly that this scheme’s introduction is an indication of a civilised, caring country.

The NDIS is a huge civilised step forward in Australia, which has been so backward with disability support that we are at the BOTTOM of OECD nations for number of people with disability living in poverty. But what many people don’t seem to understand yet is that the NDIS is an investment that will generate a financial return. If you ensure kids with disability get the support they need, they will be educated and able to work, earn income and pay tax. At the same time their parents won’t have have to give up their jobs to provide all the support so they will be able to keep working and pay tax. If people take off their “charity” blinkers and look at the NDIS for what it is – an investment in economic and social participation – the cost is placed in real perspective.

So SO true. Workplace participation stalled a decade ago and in fact, employment of people with a disability in the govt sector has gone backwards. It is a constant irritant to me that people simply do not grasp the gravitas and truth in the concept of support, fund, intervene early and reap the rewards later.

Sarah Ryan

Well written.

I hope everyone shares this so everyone can learn about NDIS and how many Australians live with a disability. I know you have opened my eyes to it all since I met and I thank you for that. xx

Right, that’s it, I’m going to cry… then tweet this post because it’s beautifully clear… I do love a good short sensible paragraph… and it really matters.

I hope my son will continue to work for a living… he’s at McDonalds a couple of times a week and self-funding, saves me a fortune. But he may not be and I’m glad there will be some help for him if necessary.

But most of all, I’m so glad for the young folks coming up and their mums and dads and for the lovely families I know whose children and other loved ones are severely impacted by a disability.

A frien of mine wrote that whenever people express their admiration, amazement or surprise at all that her family does for their son, she says; ‘But look at it this way, we’d have done just the same if it was you.’

Thank you. So beautifully expressed, Kim. It is disappointing that the passing of this historic legislation received so little media attention but that’s because people lack the imagination to see that disability could someday impact on them, whether directly or through a loved family member. Your statistics suggest they can’t really afford to be so complacent.

I certainly didn’t plan to have a son with autism. He’s cost us a small fortune over the years but have enough perspective to know our family got off pretty lightly. My husband is a GP and visits a unit which looks after severely disabled young adults. He always comes home shell-shocked. It is not a life anyone can easily imagine, but it is their life and they deserve to be treated always with compassion and respect, not penny-pinching.

Wendy

Such a shame there has been so little publicity for this.Cannot begin to imagine how hard it is for those with disabilities and their support crews.Hoping this legislation will make a difference.It could be any of us

I think that is something people forget. Having a child with a disability or being disabled doesn’t necessarily come from birth – none of us knows what tomorrow will bring and it might not be all good.

Great post. I heard Jenny Macklin tearing up in Parliament on the radio in the car yesterday, and it made me tear up too. I hope this makes a real difference to families who need help, and can’t believe there hasn’t been something like the NDIS in Australia sooner.

Bravo, Kim, bravo! Excellent post and such incredibly good news. Perhaps there is quite an upside to the low key introduction of the NDIS- and that is the great deal fewer ignorant fools out there will have less reason to bark up about where “their tax dollars” are being (“wasted”)/spent. We don’t need to hear from brainless and heartless detractors, we only need to hear the good stuff like this, from people like you.